“When I was a teenager, I can remember fantasizing that someone would ask me how much pain I had. ‘I’ll tell you every time it hurts,’ I’d say. Then I’d say ‘Now.’ ‘And now.’ ‘And now.’ All I’d ever say was ‘Now.’”

Trish Harris. Photo: Amanda Keogh

Now at 54, Trish describes her disease as having “burnt itself out,” and she no longer experiences that intense, ongoing pain.

The Walking Stick Tree is the story of how that came to be; an episodic journey interspersed with critical essays about pain, loss, identity and body and soul.

“I hope my book connects with other people’s stories,” Trish says. “Even if the circumstances are different, often the emotional story is similar.”

Getting at the nature of chronic pain, tapping it’s source in a way that resonates with readers, can be incredibly tricky. Trish describes it as a “force” that “carves away spaces inside… it is by nature an excavator, taking away and reforming what is left.”

“Sadness, grief and loss are not always given much air time in the disability community,” she writes.

Sadness, grief and loss are not always given much air time in the disability community.

“Maybe we are so busy proving what we can do in light of what others think we can’t do, that it can be hard to make that journey to our vulnerable self. As the predominant view of disability in society is that it’s a tragedy, who wants to feed into that? I wonder too if it fits into a wider ‘think positive’ ethos. We dare not mention loss without rushing to say there is also gain. And how do we go near loss if we can’t fix it?”

Trish has had many gains. She currently works in communications and runs a small business. And seven years ago, she rode New Zealand’s Central Otago Rail Trail in a motorised wheelchair, another testimony to her willpower.

“The trail is the width of a train, wide enough for a wheelchair and a bike; for two lane traffic. In the Upper Taeri Gorge I feel like I’m in the Grand Canyon. A tree offers me it’s first born, a yellow leaf propelling its way towards me like a kiss. I have arrived in Wonderland.”

We sat down with Trish to find out more.

What made you want to write The Walking Stick Tree?

When I was growing up I didn’t see my experience mirrored in those around me. I began writing my story in my head back then, as a way to understand it myself. When I returned to the manuscript four years ago I added four essays in order to link my individual story to wider stories and issues around disability.

What’s been valuable about the process?

Cover to The Walking Stick Tree

Having a book at the end of it! Completing something as big as this is immensely satisfying.

I’ve realised writing helps me think—or writing is my way of thinking. Deciding to have essays in the book gave me the impetus to spend time thinking about topics and herding my thoughts and feelings into a cohesive shape.

Through writing the book I’ve also ended up re-connecting with people from my past, and had conversations with people in the present, about the past. That wasn’t my motivation, but it’s been a precious outcome.

You describe your arthritis as having ‘burned itself out’. What does that mean exactly?

It means I don’t need to be on continuous pain medication. It means I don’t get fevers, or the rash—well, rarely. Juvenile Rheumatoid Arthritis (also called Juvenile Idiopathic Arthritis) is sometimes known to ‘burn out’, which of course is what everyone wants to happen, but is never guaranteed. My arthritis started at age six and probably burnt out in my 20s.

Despite that, the damage when the disease was active was so great, that nearly all my joints are now worn-out shonky osteo-arthritis type of joints, with very limited movement and very occasionally a joint becomes inflamed. I walk slowly, in a stiff kind of way and only for short distances. My height has been affected and because of the effort of movement, my energy levels too. Lifestyle changes help me manage what pain there is.

You have a purpose-built house and an altered car—can you tell me more about these and how having them has affected your life?

My house has low benches, light switches, door handles, window catches and cupboard. This means I can reach everything easily. The drawers glide and don’t require strength to operate. The house is on a flat section with level access. When movement is difficult and/or painful it means you have to plan ahead in order to minimise fatigue. My purpose-built house means I’m not battling an unfriendly environment on the home front and don’t have to plan domestic activities as minutely as I used to. It means I can use energy for more enjoyable activities.

When I first got a car, at age 18, it moved my life from one of dependence to independence. I had choices about where I went and when. If I can make a free decision about where I go physically it also frees my mind up to imagine where I might go next and what I might do.

An illustration by Sarah Laing from the book, showing how Trish Harris picked up her walking stick growing up.

In your book, you say that ‘sadness, grief and loss are not always given much airtime in the disability community’. What sort of conversations would you like to see around these experiences?

I’m not sure it’s about conversations, though they are a great starting point. For me, finding creative means to express those feelings and tapping into spiritual resources have also helped. Both can offer us the chance to approach big feelings in a safe way—or a way that allows for (though doesn’t guarantee) transformation.

Do you feel forced to be positive about your life?

Actually the ‘can do’ positive attitude is pretty well ingrained in me. It’s brought huge benefits to my life in terms of tackling employment, housing, transport and everyday living hurdles—so I don’t want to diss it completely.

What has also been liberating, especially in my adult years, is to acknowledge the shit. That which can’t be turned into a positive. All the aspects of having this disease that make me angry or make me weep. Acknowledging this hasn’t changed my body, but sometimes, often, it can help liberate inner aspects of me. I don’t know if we reach the end of grief, but my hope is that even when it’s big, we can find creative and spiritual ways to know it, so that it won’t be the end of us.

I think we (I can only speak for my experience of living in New Zealand here) live in a society which wants us to hurry up and get to that place of being positive, because it’s scared that if people begin to start feeling sadness or grief they’ll stay in it. I’ve had the benefit of working with people who respect timing and don’t force positivity.

Trish Harris on the Great Otago Rail Trail in her motorized wheelchair. Photo: Amanda Keogh

I admit I was really jealous reading about your experience riding the Great Otago Rail Trail! What were the main challenges and triumphs for you in doing this?

I’d be jealous too, if I hadn’t been the one doing it! It was such a gift. The challenges were around my motorized wheelchair, my energy and the trail itself. It’s a very popular trail. I knew several friends who’d done it and I talked to them about the trail surface and any other obstacles. Because it’s an old railway track we knew the gradient would be manageable. I practiced on rough surfaces (gravelly unsealed roads, some with quite big stones) and discovered my wheelchair could handle them. Then there was locating a van with a wheelchair hoist and working out which sections of the trail I could do, taking into account where the road and the trail intersected, which sections I didn’t want to miss out on and how my energy was. We factored in a rest day, when everyone else went sight-seeing and I stayed in bed!

Completing more than 100km of the 150km trail was a huge buzz. I won’t forget the first day, setting off down that track in my chair, mountains to the left and up front and not knowing what was ahead and how we/I’d manage it. Here I was on an outdoor adventure with friends, where I could participate on an equal footing. I haven’t had many of those in my life—and I don’t think I’d ever spent so many hours outside! I’m very grateful to the friends who I rail-trailed with, especially Helen who looked after all the transport and accommodation logistics and drove the van.

What are your main focuses in life at the moment? It’s the start of a new year—are you the sort to write resolutions?

I don’t tend to write resolutions these days, though I’ll usually mull over hopes for the year ahead. The last few years have taken emotional and intellectual energy—there’s no way to avoid that when writing a memoir. So, a little rest is on the agenda!

I hope to write some new poems. They’re a good barometer of how spacious my life is feeling.

I want to take up opportunities to talk about what’s in my memoir—not just my story, but how it fits into a wider story. And if I’m really honest, during 2017 I’m also hoping the memoir will take me on some adventures!

Folks is an online magazine dedicated to telling the stories of remarkable people who refuse to be defined by their health issues. By sharing the experiences of these individuals, we hope to change people’s notions about what it means to be ‘normal’.

Editorially independent, Folks is sponsored and published by PillPack. Part of our mission at PillPack is to create healthcare experiences that empower people. We don’t believe people are defined by their conditions. We pay our contributors, and we don’t sell advertising.